This morning as Noah zipped up his winter coat in anticipation of the bus arriving, I encouraged Isaac to tell Noah to have a good day. Isaac ran down the hall and returned to the living room. “Bye, Noah,” said Isaac. He smiled and stretched his arm up high in the air and waved, then zoomed into his room to put on a pair of pants. “He wasn’t doing that five years ago,” Noah said. “He couldn’t talk.” “Well, think back five years ago,” I told him. “Yep, I was in second grade back then,” Noah replied. “You needed a lot of help,” I said. He agreed. Suddenly the bus arrived, and Noah sprinted out the door, clutching his lunch and carrying his backpack. Isaac flung open the front door and yelled, “Bye, Noah.” He waved to Noah and everyone else on the bus. I was glad Isaac was wearing pants. The first time he opened the door -- only wearing underwear -- was the last time he ever did it. (Oh my stars, what an embarrassment.) Why? I told him he needed to wear pants if he wanted to stand by our front door and see his brother get on bus #2. He understood! Today is the 11th anniversary of the date our twins were diagnosed with autism. Eleven years. I will never forget sitting around a little table at Castle Hill Preschool while we heard various reports from our team members. We looked at paperwork and assessments from many professionals: the social worker, speech-language pathologist, early childhood special education teacher, physical therapist, and the psychologist. They had been assessing our boys in our home for several weeks. They had become our friends – and still are. When I initially called the Area Education Agency (AEA) and voiced my concerns about Isaac, the psychologist visited within a week or two. I was relieved she didn’t tell me to “pray about it” like our pediatrician did. We were told they both had autism. If that weren’t enough, their IQ testing indicated they both were diagnosed with mental retardation. Wow. I wanted to hear those words so we could get the ball rolling. With a diagnosis, we could help them get services and early intervention. I needed that validation. I wasn’t crazy – there was something different about my boys. These people saw it, too. Yet it still stung. Isaac and Noah were almost two years old but had scattered skills. In some areas they were slightly delayed. In others, they were functioning like a six month old or younger. I recall at the end of the meeting saying, “Thank you for all of your good work.” Then my voice got really high pitched as I continued. I got my point across, even with tears streaming down my face. I was grateful for their many hours in our home, their candid discussions, various assessments, and their listening ears. Barbara, the school psychologist said, “Well, we’ve never been thanked before during one of these meetings. This isn’t the kind of news most families want to hear.” But to me, it was the beginning of helping my sons, and I knew the diagnosis was the first step in getting what they needed. Now we could move forward. In the last eleven years, we’ve done intensive home intervention, special education preschool, elementary school, a special school, and junior high school. We have had paraeducators work 1:1 with our boys. We’ve had respite providers in our home and in the community. We’ve had appointments with speech-language pathologists, physical therapists, occupational therapists, and chiropractors. We’ve done feeding therapy, craniosacral therapy, and therapeutic horseback riding. We’ve done Spectrum Music, Spectrum Theatre, and swimming lessons just for kids on the autism spectrum. For years we were gluten-free, egg-free, casein-free, corn-free, and soy-free. (Eat like a cave man. Chicken. Potato. Green beans. Strawberries.) We’ve used homeopathic remedies and have taken thousands of supplements. We were led to an amazing holistic medical doctor and his staff, who helped our boys in more ways than I can count – with anxiety, sleep, focus, transition, mood, digestion --all without drugs. Eleven years later . . . what’s life like? Noah was discharged from special education last year, so he’s sailing solo at the junior high in seventh grade. He has a 504 Plan and has been provided with a few accommodations. He’s earning fabulous grades and is involved in choir, men’s choir, band, and jazz band. He stayed after school Monday for Cooking Club, where he said he was the only boy, but that didn’t bother him. He helped prepare tacos and do the dishes. (Yet he doesn’t do dishes at home. What gives?) Yesterday we received an 8x10 picture of his jazz band in the mail, at their most recent contest. I put it in a frame, and he placed it front and center on the desk in his room. His transition to junior high was a little rough, but he loves school. I know his case is atypical. I'm very proud and thankful. Isaac is doing well at his special school, which seems to be the best place for him to learn and to be comfortable. He is in a classroom with six students and two or three adults. He has a lot of autonomy and would love to teach the class. He is counting money, reading, working on spelling, and enjoying his vocational duties. On swim days, he has designated himself as the one to gather up his friends’ trunks, and he hangs them up to dry. (While this might be helpful, it’s also his way to control the situation.) His speech therapist called me yesterday to say he’s mastered his goal of creating sentences with his speech device, and she was wondering if we could up the ante a bit. Of course. He’s involved in Special Olympics and loves going with his school friends and teachers overnight to competitions. This morning he cleared off the table, put all of the dishes away, and as usual packed his own lunch and got himself ready. He does well with the morning routine and doesn’t need any prompts, except for the occasional, “Did you put on your deodorant?” He can do that independently now, which is nice because I was tired of looking at his armpits every morning. Often he will refuse washing his hands or eating his green beans. He is stubborn. He loves using the vending machine at the Rec Center and squeals in delight when an item is released. He knows how much money to put in the machine, and he does it all by himself, just like any other kid.

Do they still have autism? Yes, they do, but we have all changed a great deal. During the last eleven years, my husband and I have spoken to various women’s groups, medical residents, teachers, other parents, high school students, and college students. We’ve been interviewed on TV and have appeared in the newspaper. Our goal has always been to educate people. Autism isn’t the end of the world; it’s just a very different one. When we met our holistic doctor for the first time when our boys were three years old, he said, “Don’t ever give up on these guys. They will surprise you.” During that appointment, Isaac acted like a wild animal, and Noah was out in orbit. It was rare that Isaac slept through the night. Nobody was potty trained. Peace seemed a world away. I remember looking into his kind eyes and nodding. He was right. I put today – March 26 – on the calendar every year, not so we can remember that emotional day so long ago when we got the official autism diagnoses. I put it on the calendar so we can remember how far we’ve come.

At school, my son Henry wrote a blog post about a non-fiction book. It was an assignment from his teacher, and it was due today. The book he chose was Bad Pets: True Tales of Misbehaving Animals by Allan Zullo. The blog appears on his third grade classroom website. Today Henry is my guest blogger.

A seagull kept stealing from a local food store. He started doing this one summer in 2007. He walked through an open door and stole a bag of Doritos. He came many more times because it was so easy to pull off. He always got Doritos. A reporter was very surprised a seagull could steal chips. He would fly about 20 yards away and then rip it open and eat it with his other seagull friends. People started calling him Sam & started paying for Doritos so the store could still carry Doritos & so Sam could keep taking them. Some are starting to think he is a bit of a celebrity. He has been seen worldwide and on www.youtube.com. Seagulls are not usually popular but Sam is because he is so funny.

It's March, and we’re still singing Christmas songs. Even though the calendar says spring is only a few weeks away, I’ll believe it when I see it. We’re running out of places to put the snow.

Monday we awoke to a record low of -19 degrees. Noah commented that it’s fun to be a part of history. (Is it really?) Our local meteorologist reported we’ve had 55.9 inches of snow this winter, making it the 3rd snowiest in Iowa history. We’ve witnessed 38 days of new measurable snowfall, and 46 days (since December 1) with temperatures of 0 or colder.

Next year I may be sending my Christmas greetings from Tahiti.

We’ve been listening to Elf: Music from the Major Motion Picture since the day the Thanksgiving leftovers were reheated. It’s Isaac’s favorite CD and quite an upbeat album. When my co-worker hopped into my van in January and saw the music setting on a package of baby wipes that had been frozen since November, she asked if we had a DVD player so the kids could watch the movie while we travel. I explained that it’s music, and I was ready to throw it out the %$#^&!@ window. She mentioned she had not heard the soundtrack. I couldn’t bear to play it for her since I hear it in my sleep.

I’ve taken the CD out of the van. I’ve hidden it in the house more than once. It’s not worth the fight. Inevitably, the next time we get into the van, Isaac is carrying the soundtrack and has a smile plastered on his face. One afternoon we were at home, waiting for Noah to finish his variety show practice at school. Isaac was crying because Noah hadn’t taken the bus home. “Pick up Noah!” he screamed, over and over. Although it was much too early to go to the school, we did. I knew it would calm Isaac’s nerves. Henry, Isaac, and I sat in the parking lot with the van running so we wouldn’t freeze to death, while the music played and Isaac sang. He sang his heart out while he kept watch at the school for his brother, who might appear with a bright red coat and a matching backpack. In case you’re wondering, he won’t listen to the music when he’s inside our home. It’s a van thing. As a toddler, Isaac wouldn’t respond to his own name. I recall a social worker from the Area Education Agency (AEA) standing in our living room, barking like a dog. Then she quacked like a duck. She mooed. He never once looked at her or gave her a second glance. He never sang along with songs (he had no speech), nor did he hum. In preschool he loved Five Little Ducks and could imitate the sound of a duck in his own way, but it was rare that he sang along at home. I had all of those thoughts as we were sitting at the school, waiting for Noah. Here’s a kid who, at age 12, is acquiring some functional speech. Now he says a few words that most people can understand. If he wants to play Sleigh Ride over and over again, I had better allow him to sing his heart out. He’s earned it. He hasn’t been able to do it for years, even though he’s known the words all along. He usually needs some encouragement to sing. It’s as though his body just can’t produce the words, even though he knows what to say. Some people with autism can sing show tunes or movie soundtracks but have a difficult time speaking a sentence. In my experience, most people with autism love music. So I sat there, starting the van and letting it run from time to time, while we shivered and listened to Isaac’s serenade. It was absolutely beautiful.

(Please feel free to watch both videos. You may have to turn up the volume.)

Last night our family went out to dinner, and on the drive home (we must ALWAYS take the same long route to satisfy Isaac, which is never a direct one – down Main Street, past the coffee shop, past McDonald’s, up the hill, past the car wash and gas station, and if we’re lucky, we will see the bad joke of the day – and the punch line -- on the bank marquee) we talked about the weather and the long winter. All five of us complained about the snowy roads, the giant potholes, the days of school missed, and upturned schedules. Someone mentioned the huge piles of snow that likely won’t be melting anytime soon. The song Santa Baby played in the background. “It’s like Christmas except there are no gifts,” Henry said, sounding disappointed. The conversation turned somehow to the young kids in our neighborhood who used to stand in our driveway to wait for the school bus. They had been living with extended family temporarily, and they seemed to vanish as mysteriously as they appeared. Henry said a boy in his third grade class recently moved with one of his parents to Louisiana, where it is certainly much warmer during this time of year. He said his friend moves around a lot, and we talked about how difficult that must be. I told the boys sometimes families move because a parent gets a different job, they move in with a friend, and sometimes kids will live with different parents. I said that’s why we need to be kind because we never really know what anyone’s situation is like . . . what if Noah lived with Dad, and Isaac and Henry lived with me? The kids couldn’t imagine it. I said it was reality for some families for many reasons. We decided we are pretty lucky to be in this house every day, year after year, with two parents and stability while the snow continues to pile up. After we stepped inside the house, Henry said, “When I get older, I’d probably want to live with Isaac or near him because he’s going to need some help in life.” I stopped in my tracks and looked at Henry. “Right?” he asked. “Yes, he probably will need some help. That will be your choice when you’re older,” I told him. Suddenly Isaac was chasing Henry down the hallway, and they were giggling and tossing Nerf basketballs in the air. That moment hung in the air like the Nerf hoop. I wasn’t expecting to hear those words from a nine year old. I have been blessed with a son who fiercely loves his brothers and is able to sing along with the Elf soundtrack. He happens to have autism. I’m going to let him sing, no matter how many times we have heard it. I have a son who can sing, dance, and play his trombone (including a jazz solo) on stage during a variety show, all while changing costumes and keeping track of his belongings. He is soaring in junior high. He happens to have autism, too. I’m proud. I have a son who never ceases to surprise me with all of his questions, observations, and deep thoughts, both about the present and the future. And I have a loving, hardworking husband who supports us and comes to the rescue with a snowblower. He’s pretty handy with a shovel, too. Henry said the weather’s like Christmas, but we have no gifts. I’m not sure I agree.

Author

I'm Tyann Sheldon Rouw, mother of three sons, wife to one husband, and lover of all chocolates. My twins have autism. I like the color green, advocating for autism, and trying to find the silver lining. Sometimes it's not easy. Usually it's funny.